The story this time around ….

Metastatic update February 2015

If you read the literature (and it abounds) then I’m ahead of the median survival curve for this disease having so far lasted 3.5 years against a rough figure of 2.5-3 years. However, if you know how those graphs work, there’s a fast fall off with an overall survival prognosis of around 15% come the 5 year mark, so I’ve a way to go yet before I can qualify for long tail or exceptional. Looking on the downside this means that odds on I shall be dead by August of next year.

Given that the disease now seems to have spread to my liver that’s looking more likely than not. To say that I’m not amused is an understatement.

With recent blood tests showing rapidly rising CA15-3 (tumour marker) alongside similar curves for ALT and GGT the strong indication is that my liver is involved. However, a recent CT scan (just like last year’s PET scan) shows nothing of any interest anywhere.

An odd finding, but not so odd when you consider that since it’s metastasised, my cancer seems to prefer hiding in plain sight and not forming convenient, easy to spot lumps. Thus our scare of 2014 when my platelet readings fell off the cliff and diffuse bone marrow infiltration was verified by bone marrow biopsy. Platelets rose gradually across the year without recourse to the threatened weekly Paclitaxel (Taxol) until Christmas when the liver enzymes started dancing in tune with the tumour marker.

So we’re assuming that I have diffuse liver metastases and treating accordingly. If the tumour marker falls then all to the good. If it doesn’t then we’ll look at doing a liver biopsy and see if we can get more information on what’s happening. Treatment as of late January is the daily tablet combination of Everolimus (an mTOR inhibitor – with a huge debt of thanks to the Cancer Drugs Fund) and Exemestane (another aromatase inhibitor).

Thrombocytopaenia – extremely low platelets. No other blood readings out of range. Bone and bone marrow biopsies confirm breast cancer, still ER+ve & HER2-ve. Cleared for weekly Taxol but platelets inexplicably rise again on their own to just under normal range.

In mid-2008 I went to see my GP for suspected hardening in my left (intact) breast. As I had nothing to compare it to (that’s the bit of my right breast that’s missing from my last dalliance with breast cancer), and possibly being peri-menopausal by this point, once again I can’t recall being particularly concerned, but thought I’d better check. Duly and urgently referred, my mammogram showed nothing (but then neither did the original one in 1999). Neither does ultrasound, which makes FNA (fine needle aspiration) or biopsy in a breast the size of mine truly needle in haystack. With hindsight, I suppose at this stage I should have pushed for an MRI scan but unwillingness to face the awful possibility combined with really thinking that I was home free after almost ten years and abhorrence of anything shoved in my, by now appalling, veins led me to take solace in a “clean bill of health”.

Late 2010 / early 2011 found me suffering from extreme exhaustion (some days hardly able to put one foot in front of other) but put this down to being fat, unfit, fast approaching fifty and overstressed on all fronts.

31st May 2011 – in the gap between an orchestral tutti and singing Belshazzar’s Feast at the Royal Festival Hall, notice parietal (salivary) gland growing hugely under my hand as I eat a baguette. Spooky enough to skip concert (doubly miffed as first time in semi-chorus) and walk swiftly to A&E at St Thomas’s in case of an anaphylactic reaction to something I’ve just eaten. Triage nurse agrees with allergic reaction, two doctors in A&E diagnose mumps (apparently an epidemic at the time) and hand-holding friend diagnoses blocked salivary gland.

Salivary gland still swollen the next day (cute hamster look) but GP also diagnoses mumps (is this the first ever case of A&E and GP agreeing?). I point out that I’ve had mumps as an adult before and have no “mumpish” feelings bar the swelling in my cheek and now above my collarbone on the LHS, but he’s having no truck with this and says to come back in a couple of weeks if nothing’s changed. Go back to see him two weeks later (the day before flying off to Tuscany for a fortnight) with continued supraclavicular (that’s the bit above the collarbone) swelling, which by now I’ve Googled and scared myself witless. Ask for urgent referral back to Breast Clinic in time for my return from la bella Italia.

Triple assessment still yields nothing on mammogram but FNA & core biopsies under ultrasound of left breast, left supraclavicular nodes and left axilla (sounds so much more romantic than armpit, n’est-ce pas?) nodes all subsequently show strongly ER+ invasive carcinoma. At this point we thought there were two new lumps but post-MRI we now think it’s just one mass of about 8cm. Strange to think it still doesn’t show up on mammograms – cunning little (or not so little in this case) bastards aren’t they?

I am moved swiftly on to staging. Brain scan clear – phew! Bone scan either clear or a false negative (lot of them about apparently), so still looking at regional recurrence, mastectomy and radiotherapy to supraclavicular nodes at this stage.

Then my upper body CT scan has the team perplexed for a while. Small spots in lungs (not of any worry to anyone apparently), no sign of liver involvement (despite a generous, daily, middle-class intake of vino), no particular osteolytic involvement but “suspicious” bone marrow which is also termed “interesting” by some of the clinicians. This I find is a similar usage to “may you live in interesting times”. I discover later that they thought I might have a completely different and unrelated blood/marrow-involving cancer alongside the breast cancer.

So, off for a bone biopsy (not nice – avoid if you can, or opt for sedation) which confirms ER+(oestrogen positive) breast cancer across marrow and bone. Update breast MRI also shows “hotspots” on the ribs.

So by the end of August 2011 there we have it, a diagnosis of( ER+ PR- HER2-) Stage IV (remembering there’s no Stage V), non-curable, metastatic breast cancer with bone involvement. Median survival time if you read the literature is 2-3 years.

The snag in terms of hazarding a guess at prognosis is that we don’t know if the mets (metastases, distant spread from breast) are from the first primary (1999) or second primary(ies) (2008/2011) – both presented/ing exactly the same. The lapse time (or what we used to call in the computer trade MTBF—mean time between failures) is key in trying to determine this. (I’ll talk a bit more later about how just calculating the odds is a nightmare in itself – the idea of beating them seems just as insurmountable).

Treatment for the forseeable future is Zoladex, a monthly depot injection in the stomach, stopping my ovaries from functioning combined with a daily dose of Letrozole, an aromatase-inhibitor, which stops any other oestrogen in my body. Instant menopause and then some!

Sarah, this is so helpful to read, I am starting this metastatic “journey”. My first diagnosis was 2003 and then discovered bone mets June 2014. For me, the prognosis is so hard because I want to believe it is manageable for many, many years but the reality of the disease is hard to get around. I am glad I found your blog on Twitter.